TRIBUTES have been paid to an Acomb man whose account of living with early onset Parkinson’s Disease was an inspiration to people around the world.
Dr Jonathan Stevens, who died over the Chrisatmas holidays aged 34, studied Human Genetics and Biology at Oxford, and worked in medical research. He was diagnosed with Parkinson’s at the age of 33.
Dr Stevens developed a tremor in his mid-twenties, which got worse when he finished his Phd, preventing him from returning to work. He moved away from Oxford, first to Bedale, then to Acomb, closer to his family’s home near Thirsk.
His father, Brian, said: “It was way above our heads.
“He had to register with a new doctor when he moved to Bedale, so we said he should take the opportunity to get the tremor checked out. It came as a complete shock, we never expected it to be anything like that.”
After he was diagnosed, Dr Stevens wrote a detailed online blog of his experiences living with Parkinsons – http://dialoguewithdisability.blogspot.co.uk – to provide information and inspiration to other sufferers around the world.
Mr Stevens said: “He handled it extremely well, and has been working with Parkinson’s UK on the blog and writing a book on how he dealt with it that we are going to try and have published this year.”
Dr Stevens was at his parents’ home in Skipton on Swale on December 27, when he collapsed. Despite efforts to revive him by his parents and paramedics, he was pronounced dead. A post mortem found he had an undiagnosed congenital heart defect.
Mr Stevens said: “We had a quiet Christmas, then his brother Chris, his wife Erin and their two children, who he adored came over. We spent a few days playing games, opening presents and having fun. That night we got the children off to bed and were settling down to have a chocolate dessert because he was a chocaholic. He just collapsed.”
Following his death, condolences have been sent to Dr Stevens’ family from as far as America and Australia, from people who have been directed to the blog by the Michael J Fox Foundation and other charities, but Mr Stevens said the loss had left the family heartbroken.
Mr Stevens said: “Your children shouldn’t die before you. We would have preferred it was one of us rather than him. He had 30 or 40 years of life and could have done great work for others as thousands of people followed his blog and found his work and information inspirational.
“He is an inspiration to us and to many with disabilities and Parkinson’s around the world. He was a generous loving family member, positive loyal colleague, and a man of significant achievement and personal courage.
“We give thanks for the way he lived his life, for all he meant to others and the way he lit up the daily existence of all who knew him.
“He will remain in our hearts and minds for ever.”
Donations are being taken for Parkinson’s UK in memory of Dr Stevens at justgiving.com/inmemoryofjonathanstevens